Opportunity - Day 120

I think acronyms in the medical field were created either to make everyone involved sound really smart or to thoroughly scare patients into thinking those letters must mean something so intense, we shouldn't question them.  :)  So, this weekend we were in-patient for three and a half days for the HD-MTX and VIN injections at the PEC unit of LPCH with results fully monitored via CHEM-10 and CBC analysis for purpose of fighting (no, annihilating)  Pre-B cell ALL so that it is totally and completely F.U.B.A.R.  Ellie was discharged on Monday morning with a big smile, so draw your own conclusions on who won that particular battle.

We were fortunate in may ways to get this in-patient stay at El Camino hospital in Mountain View.  They only allow a max of 8 oncology patients there at a time (this past weekend, I believe there was 2-3 less than that even), so the place is just overall about 10 notches lower on the craziness scale.  It is very serene and when the on-call doc shows up for rounds, he isn't followed by 5 med students/residents.  He actually sat down with us for almost 15 minutes on both Saturday and Sunday.  I'm certainly not complaining about the hustle and bustle of LPCH - I mean, if that produces a cure, I'm good with running around with no head - BUT, with this being an expected multiple day stay, to be treated with such care is very reassuring.

HD-MTX is High Dose Methotrexate.  Up until this point she has only received a dose of this drug 10 times weaker in her lumbar punctures that go straight into her spinal cord.  For four times during Interim Maintenance, she will get the High Dose version over a 24 hour period through her port.  It is potentially toxic to the liver and kidneys.  The method is to basically hydrate her like crazy 6 hours prior to dosing and then throughout the entire stay so her body has as much help to pass it through as quickly as possible.  For our first go around with this, she ended up being about 18 hours ahead of schedule with recovery following the final drop of drug and thus got discharged early.  That's my girl.

We are still in a nice period with blood counts.  Her ANC (immune system) rating today was 3500, another all time high since diagnosis.  We expect the chemo, as usual, will start to kick in with side effects in the next few days.  We had a queasy stomach this morning (though it was short lived) and know her counts will begin to fall soon.  If we make counts a week from today, our next in patient stay will begin on Nov 4th.  The non-neutropenic days are an opportunity to do some normal things and we take full advantage.  We've had two meals out at one of favorite small restaurants in Portola Valley this week and Polly was able to take both kids for a horse ride late last week prior to heading to the hospital.  You never know how long until these types of days stick around or will potentially be gone for.

Our first hope each day of course is that she is comfortable and content.  Obviously that goes a long way to sustain as normal of an atmosphere as we try to provide.  But the second hope right behind is that she eats.  The chemo is so relentless when it comes to destroying appetite and she loses weight pretty quick sometimes.  We have to find moments where our eye catches her starting to nibble consistently on something and then pounce in there with a ton more of whatever IT is because IT does not show itself very often.  A couple weeks ago it was Campbell chicken noodle soup.  Last Friday, it was the grilled duck breast Polly's dad ordered for dinner and offered a bite which then turned into, "Ok Papa, I'll eat half"  You'll think I am joking but we're then trying to slap some butter on each bite before she sees it.  It is an interesting quest each day to say the least and I see at least a small part of her being annoyed 25 years from now when she hears the stories of what she was offered but turned down in terms of not-even-close-to-Lean Cuisine.  Staying hydrated and well fed goes a long way to making things a little bit easier, so we look for and seize every moment we can.

My high school soccer season at Serra begins next week.  In our pre-season meetings, I've stressed a great deal the idea of Opportunity.  They come and go sometimes without paying enough attention to what is actually being offered nor the knowledge of what you are capable of if you see the opportunity through to the end.  Experiences are greatly enriched by fulfilling that opportunity in every aspect...including those aspects much more demanding of personal sacrifice.  I certainly cannot say I embrace every necessary sacrifice with open arms the minute they present themselves but I recognize their significance once I can wipe the sleep from my eyes.  Opportunities to sit and watch the twins throw their milk back in the morning while jockeying for position to select the next video on the "mini pay-pay" (ipod touch) or how good my food tasted the last three dinners we've been able to sit down as a family or the incredible words I hear on the phone while at work now that I can actually have a conversation with either of them on the other end.  Polly and I have had the opportunity to see both our parents in the last week time to spend with their grand kids including a bounce house session with Polly's mom.  There are also the opportunities to help Ellie stand back up after she gets sick to her stomach (which she now officially hates with a passion) and to change her diaper immediately when she gives us that "look" because we know now how much that alone can ease some pain....or the opportunity Polly takes everytime to use amazing care when prepping Ellie to have her port accessed.  It's making this journey very tolerable every single day.

Herb Brooks, coach of the 1980 USA Hockey Team that won gold in Lake Placid in what is well known as the "Miracle on Ice" made a tremendous statement in the hours before he slayed Goliath - "Great Moments come from Great Opportunity".  If you look at just one day, and one day only....the opportunities have been there and we are so forever thankful to be witnesses.   So someone PLEASE stop me and send me back if I walk right past one.  We're focusing all of our energies on making sure we see them all.

If you are curious, here is Hollywood's version of Herb Brooks' words:  Click Here

Opportunity can lead to Miracles.  Game ON, cancer.

Qualified - Day 113

Great Day.  Ellie went in for her labs this morning and put up her highest numbers in 2 months for White blood cells (2.3K), Platelets (460K), and the all important immune system Neutrophil count (ANC = 1460).  All of which qualifies her to move on to the next phase of treatment to begin on Friday.  Prayers for healing and recovery for this day have been answered.  We are humbled and thankful.

Tonight we danced in the proverbial rain....with a little goofy jig to the "Parenthood" (NBC drama) theme song by Bob Dylan (great show!).  Great to relax tonight and are fortunate enough to get another whole day before heading to the hospital on Friday to be admitted for the start of Interim Maintenance.  Suddenly Thursdays aren't so bad.  :)  Quite ironic that we're actually looking forward to going in-patient for a few days (relatively).  But that is still a day away and tomorrow it is time to just be.

If I have the gift of prophecy and can fathom all mysteries

and all knowledge,

and if I have a faith that can move mountains,

but have not love,

I am nothing

1st Corinthians 13:2

Love for Ellie indeed.

Rejuvenated - Day 111

In the coaching circles there is a saying for teams who get off to good starts that the season does not officially begin until you lose your first game.  When adversity strikes, the strength of a team's character is put to the test and it is impossible to come out on the other side unscathed and unchanged.  Finding ways to motivate, inject strategy, and walk the fine line of pushing the team to its limits while also not exhausting them nor failing to show the proper amount of support is an ever evolving art form that takes time and knows no fear of failure.  I love the challenge and always embrace the potential of what can be learned from the situation at hand.  The reward for persevering through the adversity, taking the steps to combat the symptoms, and finally stepping beyond to higher ground when the time comes is far greater of an accomplishment than any final score in your favor will ever be.  Before that step forward can be taken, I often find a moment of magic occurs I never saw coming or at least questioned (during times where we're not so strong) if it were ever possible.  As a guy that stands on the sidelines a lot with no direct participation on the field or in this cancer battle, I can tell you these magical moments have the ability to sustain our smiles and rejuvenate the soul.

I would say it was about Thursday evening of this past week where our little girl in every way shape and form of how she was prior to her getting sick showed up again and has been running gleefully through the house all weekend.  She is back to singing and twirling.  Her appetite has returned in full force and she has for the most part slept 10-11 hours straight each of the last four nights.  Her blood counts have obviously come up and we'll get confirmation (we hope) of that on Wednesday with her next scheduled labs at the clinic.  The color has returned to her face and of course her wonderful smile has been dazzling everyone.  My parents were fortunate enough to have planned a trip up this past weekend and timed it perfectly with her upswing of energy.  So, they were able to enjoy the twins in full activity all of Saturday and Sunday.

We went as a group over to Palo Alto High School on Saturday night for the annual LLS "Light the Night" fundraiser and 2-mile remembrance walk throughout the neighborhood streets.  Prior to the walk, there was food and music as well as a heart warming ceremony to honor those we've lost to blood cancer in this community.  This is the first real LLS event we have been to and were immediately taken with the atmosphere.  Due to Ellie's schedule of rest and still slightly neutropenic body, we could not stay for the walk portion of the night, but I have a feeling this is only the first of many LLS events we will be going to down the road.  Polly and I were able to register as Bone Marrow donors, something we have been talking about doing for quite some time now.  The kind man who was volunteering in front of the donor registration tent was cured of Chronic Lymphoblastic Leukemia (the adult version of what Ellie has more or less with a much lower success rate) a few years ago by way of a bone marrow transplant.  You could tell the rejuvenation in his voice was something he'll never tire of expressing.  He is living proof about why these types of events are so important.  We were very lucky to have come across this event and promise to go back.

If Ellie makes counts on Wednesday (which we expect she will), Interim Maintenance will begin on Friday with a Lumbar puncture to put methotrextae into her spine (Hopefully you recall she has had 6 of these done already, including 4 in the Consolidation phase we just finished).  After that, she'll be admitted to the hospital for 3-4 days to get the high dose version of Methotrexate intravenously through her port.  This will be the first time she has had this form of the drug and observation round the clock is required to monitor her liver and kidney functions which could be affected by it.  She will also start taking the nightly oral dose of Mercaptopurine (6MP) which will be daily for the entire 8 weeks of IM.  Needless to say, her blood counts will fall again quite rapidly throughout next week.  So, the amount of energy she has will likely diminish and it could be another 8 weeks until we get days like this again.

But ya know....having a weekend like this has stunned us with her ability to rally, rebound, and renew.  Having finally shed the Vincristine side effects and found a way to patiently wait for her counts to rise, she has survived her Consolidation phase and allowed us all time to take some deep breaths and rest up ahead of the next phase.  We have savored the time in the last four days simply because we are distinctly aware that we know not when days like these will come exactly and that we have all been able to persevere through some very tough times thus far.  It is fuel for the human spirit and makes you feel like you are not just playing a defensive game dodging bullets, so to speak.  Rather, I feel like standing up tonight ready for the next round of the match and when that bell finally rings to get going, I'm climbing to the top rope and droppin' a Macho Man Savage flying elbow before cancer's corner can even move his stool out of the way.

I want to say thank you to the many folks who continue to bring us food for dinner on weekday nights.  I want to say a special thanks to Maggie who has never met Ellie but honored her with a huge orange ribbon on her chest this past weekend while she ran the SF Nike Women's 1/2 Marathon.  I want to say thank you to my buddy Dave who put a sponsorship together in Ellie's honor at his company golf tournament and presented us with the Tee-sign dedicated to her fight.  To my friend Katie and the Sitting Tree organization that held such an incredible event in Ellie's honor in North Hollywood a couple weeks ago.  I receive both anonymous cards and cards written by folks who are friends of friends of friends (who I've never met) offering support and prayers on a weekly basis.  All of these things lift us up and make it easy to keep going with each providing a little moment of unexpected magic that puts us one step closer to a cure.

I want to tell you about a weekend in my life that I will never forget anytime soon which occurred during my freshman year at UCLA when I was fortunate enough to travel with the pep-band up to Boise, Idaho for a set of first round NCAA tournament games in 1995.  The Bruins went into the tournament ranked number 1 in the country, had everything going for them, and presumably this weekend was supposed to be "easy".  After a blowout win in the first game on Friday, several friends and I decided to make a 3 hour trek east for the day on Saturday to go skiing at Sun Valley on our day off in between games.  I skied growing up but never outside of California (mostly Southern) so this sort of wilderness was new to me.  The day was very stormy and well below freezing for most hours with snow flurries.  We decided to head up mid day to the top which was about a 10 minute lift ride from the base.  As we were ascending, the clouds became ominously thick and the wind picked up to the point where all of the lift chairs were swaying significantly.  When we finally got to the top, the lift operator said the top of the mountain was now closed and we should make our way immediately to the bottom.  The wind was still howling and the snow started falling fast and furious.  As we left the lift, I suddenly could not see which way was up, down, left or right.  My first ever White-Out.  Long story short, had it not been for about 4 sign posts that were only visible because we started guessing which way to head (after running into the snowbank a few times)....and a snow mobile rescuer who found us about 30 minutes later, I'm not sure I would be here today.  It was a quiet bus ride back to Boise to say the least.

The next day UCLA faced off against Missouri in the second game.  We had seats right behind the basket as was custom for the band at tourney games.  Still smarting from the prior day's fiasco, I watched them play a horrendous first half and then simply look like they had come up against an opponent that had the ability to deliver the season ending punch.  All that work over 30+ games, all the momentum built up, and it was about to be done on a weekend when I was nearly done.  The situation in sporting terms represented adversity at its finest - almost no time left and down on the scoreboard by a point.  Life can be cruel to people who have worked very hard to get to where they want to be.  Then the magic happened.

A last second shot went in via a "Baby Hook" from a guy, ironically, I went to high school with 3 years prior and was always doubted because of how small he was. Afterwards, the court was stormed, we rejoiced like little kids, and the slow motion I experienced of watching that ball fall through the cylinder from my seat behind the hoop helped put a building block up in my life.  I know I am just talking about a game here, but the turnaround of emotion, the ability to rejuvenate the dream, and the appreciation of where I've come from and what I have to live for to that point was all wrapped into that shot on that particular weekend of my young (and naive) life following a big escape the day prior.  No matter the odds, we savor every moment we can in the present and never stop working for a better tomorrow.  Magic can happen at any moment.  The sacrifice needed can be overwhelming but that absolutely pales in comparison to the reward seeing Ellie's renewed smile come out brighter than ever on the other side.  Bring on the next challenge, we're rested and ready to go.

P.S.  If you'd like to see the famed baby hook shot - Click HERE

Waiting - Day 106

Hurry up n' wait.  A very difficult thing to stomach sometimes when all of us are so ready just to "will" this thing into a better situation every single time Ellie gets her blood checked.  I go through my day with various school activities and student interactions where progress in some way, shape, or form is always the end goal.  Extended patience is derived from the learned experiences that progress will ultimately show itself over the long haul in most cases.  Cancer is such a different, unique, and fairly tormenting beast altogether.  Every patient responds slightly different and all we can get are expected trends but not absolute ideas of what tomorrow holds.  So, its tough to come home to just "hurry up n' wait" when progress is slow, not guaranteed, and sometimes puzzling to all involved (doctors included).  It is very unsettling to come home after a long day and not be able to feel that next step.  The LLS message boards have been a good outlet for information to know many others have experienced some of the individual symptoms (like huge 2 yr old irritability) we've had at different times.  At least if we have to wait, we can do it together virtually with others.  That helps a lot.

Ellie's 2am wakeups subsided after Friday and she has turned a small corner in terms of the constant irritation she felt all of last week.  Her smile and eagerness to participate returned over the weekend where she was able to laugh.  If you don't know what the healing power of laughter can do and at what magnitude....then I suggest you meet a toddler with cancer.  It's heavenly, innocent, and more powerful than anything money can buy.  She has had smaller but still significant meltdowns though even through today, including a return of a 2am fit last night.  We're trying hard to decipher what's causing them because very little can be done to console her for about 20 minutes.  It seems this bout was a night terror (which I guess can happen with normal kids this age).  Her energy always seemingly parallels her blood counts and we thought she had been moving in the right direction since the weekend because she was more active.  Today's bloodwork was a bit of a mixed bag.  She did not qualify for IM to start on Friday.  It has now been about a month since her last injection of any chemo drugs that are immunosuppressant which is very worrisome because we learned from the doc the cancer can potentially come back without showing evidence in the bloodwork.  (I feel like screaming sometimes - could we please get  a book, Doc, on all the things that could "potentially" occur?!!!?!)  I know there is now way to completely anticipate everything.  Doesn't mean I have to like it.

I don't want to sound too down here though because the plus side of today was promising despite not getting the green light to get treatment going again.  Her blood work showed normal platelet levels of 300+ and a 70% Monocyte count (Monocytes are the baby building blocks to new healthy white blood cells), so the signs are starting to show, as they have in the past recovery periods, that her body is starting to regenerate.  This eases any thought of the cancer returning because the signs of regeneration are always positive in nature even if it took a longer period of time to do so.  We will go back on Friday for more blood work to hopefully see that immune system rating climb above the magic 0.75 mark (she currently is still at 0.1).  If we qualify, her IM first hospitalization will begin on Monday.

I also need to mention that the doctor in the clinic today happened to be one of the most senior docs the Bass center has at LPCH and he allowed me to call him directly this afternoon to ask more questions since I was at school when Polly took Ellie in for labs.  To get that sort of instant connection for the purpose of discussing a parent's concerns is invaluable.  I am very thankful for that.  Doctors cannot control a patient's recovery time from chemo but they can put up a wall of support through calming reassurance and help us persevere through a difficult waiting period.  On Friday we'll know more and for now, nothing really else matters....so why not just make the best of Thursday (tomorrow) instead of worrying.  Funny, I have to type that for it really to have to settle into my thoughts as the right course of action tomorrow.  I think that is one of the biggest reasons why this blog has been useful.

We are all moving in some sort of direction.  I'd like to think we do it because we hope to make tomorrow more fruitful for our families and leave a mark with those projects we care so much about.  It's not the burden of work so much as it is the idea of moving forward with sometimes painful sacrifices now.  I believe that whole heartedly.  Often the drag of "waiting-to-get-there" masks the truth of what we're really supposed to see.....and that is everything we encounter along the way before the final destination is reached (or even in sight for that matter).  There is a bigger picture, of course.  But right now, she sleeps soundly in her bed and is likely to get to go to the Pumpkin Patch tomorrow with her mom and brother.  Thanks to the doctor today and of course the unending support and love Polly gives to me, that's enough to step down a bit, wait patiently for Friday to come, and ENJOY every second of laughter in whatever spurts I am lucky to see it in tomorrow.

Rough Week - Day 101

After I posted on Tuesday, things started to go down hill this week.  Ellie woke up at about 2am Wednesday morning very upset and in pain.  After about 3 hours of trying to calm her down, the three of us got about 90 min of sleep before it was time to get the day going again.  She has had bouts of persistent irritability before, but we were surprised when it went beyond just a small portion of one day.  Throughout the day she'll try eating or playing with something small and in the process of the activity, she'll get frustrated when something gets dropped, doesn't fit together, or just doesn't go the way she wants it to and start crying.  We sprint back and forth in the house trying to get her the things she thinks she wants but to no avail and we simply have to wait it out.  She wimpered for most of Wednesday and Thursday.  As a result, Polly and I are crawling into the weekend.

The culprit here seems to be the drug Vincristine which is given at Week 7 and Week 8 at the end of Consolidation.  We've had it before in weeks 3 and 4 and also during Induction (initial month of treatment) but the effects rarely lingered more than a day.  Thus, another harsh lesson has been learned - the effects of chemotherapy are cumulative and her body is taking longer to recover because the amount of drugs she has received has increased dramatically over the last 8 weeks.  I had figured since the PEG shots in Week 7 and Vincristine a week ago were non-immunosuppressant, her counts would rise nicely this week.  I need to stop making predictions.  She went to LPCH on Wednesday for her blood work that would hopefully qualify her to start Interim Maintenance today and it wasn't even close.  Her White Blood Cell count is down to 0.2 (lowest it has ever been), she needed a platelet transfusion because she was below the minimum of 20 on that front and could not even calculate an ANC value due to so few White Blood Cells (we report this as <0.1 neutrophyl count).  Just so you know, her platelets need to be 75 and her ANC needs to be at 0.750 for IM to begin.  Once we knew those numbers, her fatigue is justified.

When I was younger, I remember having to take iodine supplements for some random flu bug I had.  It was given in liquid form and had to be diluted in orange juice to be edible.  It was the worst tasting thing I think Ive ever had....and as a result I remember it to this day.  I never understood why enduring that was necessary.  I think El is wondering the same thing about Vincristine.  Besides hair loss and nausea, this drug causes Neuropathy (nerves from her brain/spine that are causing pain in her legs, arms, and joints).  Her arms shake sometimes as a result and any sudden movement with her feet causes pain.  I want to stay upbeat because it is who I am most of the time, but her crying from this whole ordeal drains like nothing else ever has.  I'm getting upset just typing about all this.  WHY WHY WHY?????

When her misery hit the 48+ hr mark yesterday, we finally asked if we could come in and see our oncologist. Best thing we could have done.  Really.  Polly had to wait a while to see him but he provided some reassurance that was simple yet very needed at that point.  More than the average number of kids on the same protocol experience delays in chemo heading into IM and low LOW blood counts right after Consolidation.  We managed to sleep from 10pm til about 5am last night with no 2am wakeup like that last two nights.  It was better but I'm still running close to empty this evening and will be finding my pillow as soon as I can shut this computer off.  We have found one calming item that has worked to subdue her for about 30 minutes at a time this whole week - Campbell's chicken soup.  It is the new Stoneybrook Yo Baby Yogurt for us if you will (at least for now).  Polly bought a case this afternoon.  I came home from a very long week at school this afternoon to a slightly happier daughter.  She managed about 2 hours of smiles before she melted again around 5:30.  The doc said the Vincristine effects could last as long as a couple of weeks (God, I hope not).

We go in next Wednesday for another try at qualifying blood work for IM to start the following Friday (Oct 14th).  If that occurs, she'll go into the hospital for a couple of days for the high does methotrexate and a lumbar puncture of intrathecal methotrextate into her spine.  So, we wait for that magical turnaround in blood counts.  It occured just after Induction and happened almost exponentially in about 2 days.  Here, it needs to happen in the next 10-14 days or else the worrying will go up on all sides around here.  We're doing our best to stay patient.  Timmy's ever expanding vocabulary provides some comic relief.  He now responds to every answer we give to his questions, "Whhhhhyyyy?".  What's even better is that I can give him a reason back that has nothing to do with anything and he accepts it contently with an "Oh".

Timmy:  Daddy, Timmy play with (neighbor) outsiiiide?

Daddy:  No, buddy, its time for dinner soon and besides its been raining so its too cold right now.

Timmy:  Whhhhyyyyy?

Daddy:  Well, because the Monkeys in the living room are playing Monopoly

Timmy:  Oh

Ok, I don't give him answers like that all the time, but on occasion we try to keep our sanity anyway we can  :)

I guess we consider ourselves quite lucky to have had the September that we did which went by almost trouble free.  Ever since her last hospital stay ended on Sept 1st, she had been skating through treatment.  I feel like just when we get a handle on things, the reality hook decides to come out and dammit if it just doesn't ever seem to play fair.  Polly can barely work now because of the multiple days at LPCH and Ellie's needs increasing during IM with hospital stays involved.  She has worked so hard at her own business and I wish I could make this better for her.  We maintain the day by day outlook and try not to focus on anything other than this next week.  Whatever time we can spend in other arenas outside of the twins - great.  What time we can't spend....I try not to worry about very much (is it really worth it to worry at all?!).

I'm going to go back to "Rudy" again if you don't mind.  When he is seeking admission in his last window of opportunity to Notre Dame (prior to the start of his junior year), he sits alone in church pew praying the night before admission letters come out.  Father Cavanaugh comes walking through and sits in the row right in front of him for a minute.  He sees Rudy looking for answers and offers a harsh reality, "Son, in 35 years of religious study I have come up with only two hard incontrovertible facts:  There is a God and I am not him".  He makes mention though before he leaves of something I have thought about this week, "Rudy, the prayers we say are something we do in our time....but the answers come in God's time."  With no rational explanation for week's like this, I am trying my best to find patience in that exact sentiment.

Please pray that Ellie's smile returns this weekend and that we get back to her treatments next Friday.  I want so badly to tell her all about the Monkey Monopoly games too.

Chemo 101 - Day 98

Knowledge is power, right?  The more happenings I can expect to occur vs being shocked by their arrival, the better.  Polly and I have learned that much of what we want to know ourselves (sometimes in huge volumes) about the cancer treatment won't necessarily change how she is being cared for, but.....and I say BUT, there are times when advocating for Ellie while at LPCH is an absolute must.  The doctors and nurses, as good as they are and as incredible as their work is, do cancer all day every day for hundreds of patients.  From my perspective, and I apologize for thinking like this sometimes....I am a little jealous they get to go home at night to their healthy kids/family and forget about this world for a while.  It is understandable that within the daily grind of their normal work day they on occasion can become a little numb to the emotional side of our plight, they can forget a logistical detail, or worse....give Polly or I the "oh, yeah THAT - happens a lot - no biggie" line when we firmly believe it is a big freaking deal.  BUT, on the parent side of things, this sometimes drives us bonkers.  Polly and I do not want it to be lost that her life is at stake and we do not always have it together during various "happenings" to be the cheeriest, most supportive people.  Everyone is human here and that is not lost on me.  So, the more we can learn and know about this disease, the more we can advocate and avoid surprises.  Most of all, knowledge helps bring a little more peace of mind.  And honestly, in a day to day atmosphere, you can NEVER get too much of that.


Chemotherapy drugs are tailored to specific types of cancers.  The goal is simple - attack the cancer cells, keep them from reproducing (via meiosis), and pave the way for a clean slate where new cells can grow and flourish.  As I alluded to in my last post, past treatments for leukemia used to hit the cancer hard with only a couple drugs for longer periods of time.  They found that the Leukemia became resistant to those drugs in effect learning how to fight back and make the drug ineffective.  Presently, the chemotherapy "cocktail" given to patients over the course of multiple years effectively sucker punches the cancer and doesn't allow it to gets its bearings to stand back up because its being bombarded from so many different angles.  In order to do that scientists and doctors had to figure out how to hammer the various phases of cell creation with specifically targeted drugs (You wouldn't send the Army in for a war being fought several hundred feet deep in the ocean, now would you?!).  Here is the basic arsenal of the past few months with lots of help from chemocare.com:

Mercaptopurine (6MP) - Mercaptopurine belongs to a group of drugs known as antimetabolites. It resembles a normal cell nutrient needed by cancer cells to grow. The cancer cells take up mercaptopurine which then interferes with their growth.  We give this orally to her nightly for periods of 2 weeks at a time during Consolidation.  It will be given every night for 8 weeks in IM.

Vincristine – Antimicrobial agents (such as Vincristine), inhibit the microtubule structures within the cell.  Microtubules are part of the cell’s apparatus for dividing and replicating itself.  Inhibition of these structure ultimately results in cell death.  Chemotherapy with Vincristine is most effective at killing cells that are rapidly dividing.  Unfortunately, Vincristine does not know the difference between normal and cancerous cells and thus both are killed at the same time.  “Normal” cells will ultimately grow back and be healthy with a small cost of side effects.  **Jeff's Add-on - This drug is awful.  It causes Ellie's limbs to tingle, joint pain, hair loss, and just overall irritability.  Our worries with Vincristine were elevated just today because she was so unhappy that she cried on/off for about 4 hours straight.  Have I mentioned I hate cancer?

Peg-L-Asparagenaise - All cells need a chemical called asparagine to stay alive. Normal cells can make this chemical for themselves, while cancer cells cannot.  The enzyme asparaginase breaks down asparagine in the body. Since the cancer cells cannot make more asparagine, they die.  Pegaspargase is a modified version of the enzyme asparaginase.

Methotrextate - Methotrexate exerts its chemotherapeutic effect by being able to counteract and compete with folic acid in cancer cells resulting in folic acid deficiency in the cells and causing their death.  This action also effects normal cells which can cause significant side effects in the body, such as: low white, red and platelet blood cell counts, hair loss, mouth sores, difficulty swallowing, diarrhea, liver, lung, nerve and kidney damage.  This is the drug that will be given in such a high dose four times during IM that she'll need to be hopsitalized while she processes it.

Cytarabine - Cytarabine belongs to the category of chemotherapy called antimetabolites.  Antimetabolites are very similar to normal substances within the cell.  When the cells incorporate these substances into the cellular metabolism, they are unable to divide.  Antimetabolites are cell-cycle specific.  They attack cells at very specific phases in the cycle.  This drug is the one Polly and I inject Ellie with at home.  The anecdote?  Piles of stickers she can put all over the front of her outfit.  Brings a smile everytime.

Cyclophosphamide - Chemotherapy drugs that affect cells only when they are dividing are called cell-cycle specific.  Chemotherapy drugs that affect cells when they are at rest are called cell-cycle non-specific.  The scheduling of chemotherapy is set based on the type of cells, rate at which they divide, and the time at which a given drug is likely to be effective.  This is why chemotherapy is typically given in cycles.  Cyclophasphamide is classified as an alkylating agent.  Alkylating agents are most active in the resting phase of the cell.  These drugs are cell-cycle non-specific.  This drug requires two hours of hydration via an IV for two hours before and after it is given.

Dexamethasone is a potent synthetic member of the glucocortoid class of steroid drugs.  It acts as an anti-inflammatory and immunosupressant.  The main effects of dexamethasone and steroids like it seem to be due to their anti-inflammatory properties and their ability to alter immune system responses. For example, dexamethasone helps prevent white blood cells from traveling to areas of the body where they might add to swelling problems (such as around tumors). It also seems to help with the treatment of certain blood cancers (such as leukemias) by causing some cancerous white blood cells to commit suicide.  This drug also causes huge appetites, swollen faces, huge mood swings.....and is generally an awful thing to have to take.

There are about 3-4 other drugs I have not listed that are on our horizon at some point in future phases.  The understanding that these side effects are temporary is paramount to being able to persevere through all of this. Needless to say, if there was a wish to be made here beyond the obvious one to make her whole once again....it would be for me to change places with her.  I would do it in a heartbeat.

Please keep praying for her well being.  We have been so fortunate to be "event free" for the most part the last month or so.  We hope to keep it that way.

Consolidation Done - Day 94

I think the tone of the words that end up in these blog posts have almost everything to do with time of day I decide to sit down and write.  It's Friday afternoon right now, I'm fired up and ready to go.  Yesterday was an absolutely exhausting day at the tail end of a week that often seems to crawl by at times.  I'm just not a big fan of Thursdays and have been sleep deprived.  Quality sleep works minor miracles and oh what anything over 6 hours solid can do for the mind, body, and soul.  Much more positive things to say today as a result.

Day 94 marks the end of the 8 week Consolidation phase.  Yeah!  Ellie received her final shot of Vincristine this morning and got a blood transfusion to raise her red blood cell count for the weekend (often its almost like an instant adrenaline boost).  Since she has not had any drugs that would suppress her immune system in a little over a week, her body should be elevating back to really good blood counts by early next week.  This means her energy will be great and we may even be able to take her out of the house somewhere.  She gleefully took a bright yellow hat out of the fun box that "Joe" brings around the Bass center every now and a again while kids are getting their chemo (Joe is a kind hearted older man who roams the hallways at LPCH as a volunteer on a daily basis just checking in with folks and making sure everyone is doing ok).  Seriously, this thing is like a light bulb.  But Ellie is so excited to announce upon her arrival home the new things she has gotten while at the hospital that you would think she'd just been to Disneyland.  Even though she has been neutropenic for the past 3 weeks, she has been smiling the whole time.  And when she smiles, Polly and I smile.  Its infectious really.  Goes back to what I was saying a while ago about her teaching us.  Years from now when I tell her about how she battled so hard throughout this fight to get the upper hand, I will always remind her of the smile she possesses and how our feelings of hope raise exponentially every time she showed us the way.

Our next 8 week phase is called Interim Maintenance (IM) which will start next week.  It has its good parts and not so fun parts as they all do.  The good part is that the amount of chemo she gets is a lot lighter in terms of day to day over the next 8 weeks.  The not so fun part being that one of the drugs is given in such a high dose that it requires in-patient hospital stays for observation purposes at weeks 1, 3, 5, and 7.  So, if her blood counts come up by this coming Wednesday, she will be admitted next Friday for about 3 days for her first stay and IM officially begins.  The significance of this IM start date is that per our ALL protocol, all of Ellie's treatment will officially end two years this day....which would be October of 2013 (about 466 days in all).  We are told we have our hardest 8 weeks of all coming up after IM is over (especially it being in the middle of the winter) so any sort of easier schedule between now and then will be welcomed with open arms.

We had to say goodbye to our Nurse Practitioner, Erika, today because she is leaving Stanford and moving with her family out of state.  Leukemia protocols are fairly straight forward in terms of what & when things need to be done so that if you are on schedule as Ellie is, you typically don't see the actual doctor very often.  So, the close relationships are built with the NP's.  Erika has provided tremendous reassurance when we've needed it the most and tolerated our mini-freak outs whenever they have occurred.  It is these types of individuals that help turn parental shock into an empowered support structure where chaotic days and nights during treatment can be handled more rationally. We owe her a great deal of thanks and really hope we'll be able to form the same bond with our new NP.  What a job this is for them.  You have to be incredibly organized, compassionate, understanding of the seriousness of every treatment step, and above all you've got to be able to persevere through the emotions that cancer puts everyone through.  There's no way a doctor or nurse can go 466 days with one patient and not form some sort of bond.  The fatigue on everyone involved can be unbearable sometimes, I'm sure, if not from medical procedures and results....then definitely from all of the dealings with stressed out parents.  This is where I believe faith and the power to dream fuel the human spirit.  Everyone comes together and just finds a way.  I will never stop saying thank you to these wonderful people.

I get asked from time to time about the various drugs Ellie has been given over the past few months.  I did a little research and will give some likely too scientific responses in the next post about the various chemo weapons in our arsenal.  I did want to say that the drugs we are dealing with now have been around for years.  Research and tons of clinical trials (brought together under one roof by the C.O.G. - Children's Oncology Group) has found a way to mix and match these drugs at strategic times in doses and quantity throughout treatment.  This ensures the enemy in all of this doesn't get too used to fighting just one drug and build up resistance.  In the 1960's 1 out of 25 kids Ellie's age survived.  In 2011, that ratio is now 4 out of every 5 in the same age group.  We have good reason to dream now....and dream big.

One of my favorite movies of all time centers around the true underdog who attempts to play football at Notre Dame (and YES, the framed poster of that movie still hangs in my house....all be it in a less prominent location than when I was not married :-)  )  During the initial part of his journey to fulfill his dream, he loses his best friend Pete to an accident at the family Mill.  The hardship is ultimately what gives him the strength to begin his quest away from home and pursue admittance into Notre Dame.  Prior to the accident, Pete gives him a birthday gift of a letterman's jacket, a pat on the shoulder, and a simple statement - "Well, you know, my Dad always said having dreams is what makes life tolerable".  It is the little things said to us on a daily basis like this which can resonate for a very long time.  So no matter how little sleep we get and how tiring the weeks become, the dream here is alive and well...spearheaded now with a bright yellow hat.